Graves Eye Disease and Hyperthyroid

Besides yourself, how many others do you know with Grave's Disease?

For some reason, I am learning of more and more people who have Grave's Disease. 

Most recently, I saw a former colleague of mine over the weekend who mentioned she had Grave's Disease.  Today, I learned one of my dad's friends' wife has Grave's Disease and has had it for years.  And a couple of weeks ago another business colleague of mine told me his mother has Grave's Disease. 

Coincidental?  The more I think about it, maybe not.  It got me thinking, "I wonder how many visitors to my blog actually know of others who also have Grave's Disease?" 

Know someone else?  Drop a comment below and let me know. 

Frequently asked questions regarding Grave's Disease & Hyperthyroidism

  I'm excited to share with you 31 frequently asked questions patients often have, as written by Mary Shomon on her thyroid-info site!  This is a very comprehensive list which includes everything from a broad definition of hyperthyroid, treatment for Grave's Disease, side effects of anti-thyroid drugs, side effects of RAI, and much more.  This is not just an excellent place to start for those of you who've recently been diagnosed with Grave's Disease, but Mary Shomon is a foremost author on the topic.  I recommend her books (along with several other authors) which you can find in the right-hand column of my blog for reference. 

Don't wait!  Click here for Mary Shomon's list of 31 Frequently Asked Questions patients often have about Grave's Disease and Hyperthyroidism.

 

January is Thyroid Awareness Month

January is thyroid awareness month!  Even though it is quickly coming to a close, it's not too late to share with you information I found as part of an awareness campaign by the American College of Endocrinology on the importance of endocrine health.  It's called The Power of Prevention. 

In their magazine (Download POP_magazine_Jan2009_final), you can read about thyroid cancer, hyperthyroidism (including Grave's Disease), hypothyroidism, thyroid nodules, Hashimoto's Thyroiditis, various treatment options (such as radioiodine therapy RAI) and much more.  It's a 32 page resource chock full of information.  I was excited to find it and wanted to share it with you here. 

You can also go directly to the "power of prevention" website here.

Grave's Ophthalmopathy without the presence of thyroid dysfunction?

This evening when I logged on to my blog, I noticed a woman named Sissa had posted a comment on this post entry on spontaneous resolution of eye proptosis.Her comment underscored the very essence of this post's subject.  Is it possible to have Grave's Opthalmopathy without the presence of a thyroid dysfunction?  Yes!

Here is her original comment:

"Do you have any thoughts for someone with proptosis of only one eye and normal thyroid values? I was "diagnosed" a little over 2 years ago with Thyroid Eye Disease, only I have never had abnormal values?! I was going through a very stressful time in my life and one day I just noticed the asymmetry in the mirror. My husband and my mom saw it right away, but it took longer for everyone else to notice. I went to an ophthalmologist once, who sent me to a neurologist, who sent me to an endocrinologist. In the end, because I had no tumor visible in the CT or MRI, the gave me this diagnosis. It is now a source of extreme self-conscienceness and I wish I could find some help somewhere :(  Also, my endocrinologist has simply been checking my values every six months, but there are no other follow-ups going on. Seems odd to me."
(posted by Sissa on 1-6-09 at 2:09pm).

 And here is my response:

Hi Sissa, that's a great question. In fact, I'm going to link to the response below in a brand-new post on the topic as it's the first time this question has come up on my blog.

From everything I have read, and I've read a lot of books and articles, it is possible to have Grave's Ophthalmopathy (G.O.) without any apparent thyroid disorder.

Let me give you a couple of references that address your question. They are from Elaine Moore's book called Thyroid Eye Disease (you can find the book in the upper right hand corner of my blog). She states on page 19:

"Of all clinically significant cases of GO, 80% occur in patients with Graves' disease, 10 percent occur in patients with Hashimoto's thyroiditis (an autoimmune hypothyroid disorder) and 10 percent occur in patients with no signs of thyroid disease."

And on page 20 she goes on to say

"...in about 10% of cases, G.O. has been known to develop years before the thyroid disorder emerges. This condition is known as euthyroid Graves' disease. In eythyroid Graves' disease, patients show no signs of having a thyroid disorder...."

It's good that you're getting your thyroid hormone levels checked periodically. But I'd also highly recommend that you try and find a doctor who specializes in thyroid eye disease, or G.O. for further evaluation. Most ophthalmologists's see so few patients with these types of issues they may not be able to diagnose the problem properly let alone provide the appropriate treatment. Do you live near a large university hospital? Can you give them a call for a referral. Can your family physician provide a referral, or your endocrinologist for that matter?

In closing, I'm glad to hear the CT and MRI came back with no evidence of a tumor. I wish you the best. I hope you'll return and let us know how you're doing. Although this is the first time this question has come up here, I'm quite sure you're not alone. So many others out there will stand to benefit from what you can share as well.

Whether or not she has G.O. without any thyroid issue remains to be seen, and only her medical professionals can determine for sure what in fact is causing the problem.  But since I do get a lot of questions, and since this one was a brand new one in the history of this 21 month old blog, I thought it deserved it's own post. 

To my readers--does anyone have any specific experience that could help Sissa out on this one? 

For more information you can check out Elaine Moore's Graves' and Autoimmune Disease Education site.

And you get get her book here too.

 

 

Questions to ask when diagnosed with Graves' Disease (#3): What is the difference between Grave's Disease and Hyperthyroid?

Right at the top of the list of questions to ask your doctor (and read about yourself) is:  what is the difference between Grave's Disease and Hyperthyroid?

Maybe you didn't know that Grave's Disease is actually an autoimmune disorder.  That means your immune system, for whatever reason, is the problem--not your thyroid itself.  Your thyroid gets attacked by your immune system.  Grave's Disease happens to be the most common form of hyperthyroid.

You should explore this discussion with your doctor.  Understanding the underlying root cause of your Grave's Disease is important in your treatment.

Questions to ask when diagnosed with Graves' Disease (#1): let's start with the basics

I promised posts on specific questions you should ask when first diagnosed with Grave's Disease.  The very first thing I asked was "what is GRAVES disease?"  I had no clue.  My family doctor explained the basics to me over the phone, then said she'd refer me to a specialist, an endocrinologist. 

First things first:  you really need to inform yourself of exactly what it is you're dealing with.  Homework at this stage will serve you well through your course of treatment.  You absolutely need to be an informed patient so YOU can participate in the decision making process and to know whether or not your doctor(s) is one you're comfortable with.  So many patients who e mail me are not and switch a time or two to find one they trust.  I'm lucky--my endocrinologist is very patient, thorough, professional.

Did you know that Grave's Disease is actually in the autoimmune family?  Yep.  You should know what is happening within your body to cause the thyroid condition.  Check out the books I recommend on the left column of my blog.

Don't be shy.  Ask questions.  Read books.  Jot down notes.  Knowledge really is power--and you don't have to learn it all over night.  Be patient.  By all means, be an informed patient.

Maybe I was lucky, but so many have a difficult time in getting a proper Graves' Disease diagnosis

The timing of Mary Shomon's e newsletter I subscribe to couldn't have been better.  Recently I've responded to several of you, here on my blog and via e mail to those of you who emailed me directly, who expressed frustration at trying to get a proper diagnosis, having to switch doctors, not getting proper tests done, and more.  I was excited to see the article in my in box that speaks to those very issues!!  Not only are you not alone, but you're also about to be equipped with some very practical advice that can help you.  By clicking here, Mary Shomon's Q&A with Dr. Jan Nicholson, you'll find a short article that will help make you a more informed patient when it comes to your proper diagnosis, along with more information on the "mind-body" connection to thyroid disease.  I think you'll really like it.

A new site found--wide variety of information on thyroid disorders

I found a great new reference resource on the web this evening--ThyroidManager.org.  Here's a quote from the home page:

"Thyroid Disease Manager^@ offers an up-to-date analysis of thyrotoxicosis, hypothyroidism, thyroid nodules and cancer, thyroiditis, and all aspects of human thyroid disease and thyroid physiology. It provides physicians, researchers, and trainees (as well as patients) around the world with an authoritative, current, complete, objective, free, and down-loadable source on the thyroid. This website is directed to helping physicians care for their patients with thyroid problems. WWW.THYROIDMANAGER.ORG is updated continually with important new information, and major revisions are done annually."

This is an excellent resource and very up to date.  I've only skimmed parts of it that apply to me, but will spend a great deal more time purusing the information at a later date.  Interested too?  Off you go, click here:  Thyroid Disease Manager

I also just added to the growing list of my favorite links.

Stress and Graves Disease

According to Elaine Moore in her book Thyroid Eye Disease , (see p. 79 in chapter 8) ". . .stress is known to be the number one trigger for Graves' disease and is known to worsen symptoms in patients with Graves Ophthalmopathy."

I have absolutely no doubt that stress was high on the list of factors in my case.  I've spent years working in stressful jobs at my employer (love the work, but it's intense!), moved 5 times in 7 years criss-crossing the country (all job transfers), had assignments where I worked 60-70 hours a week for months on end.  Not exactly a good work-life balance situation.  Stress takes its toll and even good things that happen to you can be stressful.

Then, in early 2005, we had just over 100 people in our department.  By the end of the first quarter more than half were gone, encouraged to leave the company with "buyout" packages.  We restructured, the 2nd time since I'd joined the department in January 2004, and we all took on more work.  With half the people.  As one of the leaders of the group, it was my responsibility to not only sit down with many employees and ask them to leave the company, but then I also lead and guided the remaining employees on my team through a very difficult transition.  We'd just gone through this a couple of years ago too. 

Then my father got sick in the early morning hours following father's day--what was thought to be appendicitis turned out to be colon cancer and one week later he had major surgery.  It was when my mom and I would go visit him in the hospital that I noticed, and mentioned to her, that my eyelids opened at different rates.  I'd never noticed it before.  There was a reason.  It was the start of all the symptoms I would later experience.  Then just a few short months later I'd put a name with them--Graves Disease.

Again, I have no doubt that the work stress and personal stress I experienced over the years likely triggered my Graves Disease.

More to come on coping with stress, but it's essential that you do.  The affect stress has on your autoimmune system is HUGE.  Take it from me and my firsthand experience. 

Finally, the answer I've been waiting for--Graves Disease-Hyperthyroid

November 2005.  I land in my hometown Tuesday night.  I'm excited to still be on vacation and take care of a few things on Wednesday, running errands and preparing for my trip to Santa Fe and Telluride.  Thursday rolls around and I've just a few hours to spare before I head back to the airport to catch my flight to Albuquerque and my cell phone rings.  I am visiting my parents (they live close to the airport).  It's my family doctor.  Without hesitation, she simply states, "you have Graves Disease."  That was it.  But what exactly was IT? 

She was particularly concerned about my fast, irregular and hard-beating heartbeat and asked that I get a prescription filled immediately.  Immediately?  I explain to her I'm headed out the door to catch a flight, on vacation, out of town.  She insists I pick up my prescription and begin taking the medication immediately.  The medicine is a beta blocker.  I stop by my local drug store en route to the airport and off I go. 

On the plane my mind is racing.  Graves Disease.  The name itself makes it sound like a grave diesase.  I specifically recall her telling me we'll have to watch the eyes.  The eyes?  What do my eyes have to do with anything?  For many, there are no eye symptoms, ever.  For others, they can range from mild to quite severe and require surgery.  More specifically, she said we'd have to watch for eye bulging.  Now THAT got my attention.  She had explained the potential complications and although I didn't realize then that they'd already started (it'd be a few months before I'd really discover first hand what was happening) I would later look back, put 2+2 together, and remember how odd I thought it was that when I opened and closed my eyes slowly one eye would go up faster than the other.  A little thing but not in any way normal.  Only later would I know that was the first sign something was wrong, with my eyes that is.  There's so much you need to learn about when you're eyes are affected with Grave's Disease.  Especially when the pressure and swelling behind the eyes causes them to move outward, or bulge.  This is called Graves Ophthalmology.   I will be blogging quite a bit about that for sure.